Hospice Care for Children

Reviewer: Christy Torkildson, BSN, MSN(George Mark Children's House)
Description: An impressive list of experts provide a comprehensive overview of all aspects of pediatric palliative care in the third edition of this book, building on previous editions (1993, 2001) and demonstrating the tremendous growth in the field.
Purpose: The stated purpose is to describe all that can be done to support and care for children facing life-threatening conditions and their families. Although the objective is grand, the book is an essential addition to the library of all who care for these children and their families. It provides a comprehensive overview of most aspects of pediatric palliative care, and case studies, charts, and extensive references provide practical information that can be used in all pediatric palliative care programs and models of care.
Audience: Although written for healthcare professionals, the book targets all who may care for a child facing a life-threatening condition. Most of the chapter authors are national and international experts in the field and they provide an excellent foundation in the topic, drawing on relevant and recent research to do so.
Features: This book provides an excellent foundation in pediatric palliative care, not just end-of-life care. It discusses aspects of pediatric palliative care across different settings as well as from different perspectives. Topics range from practical information needed for clinical care to the more holistic and comprehensive needs for the child, family, and staff. There are excellent chapters on ethics and care of siblings, as well as a comprehensive, annotated list of select literature for children and adolescents and guidelines and resources for adults written by leading experts. Although the book is excellent overall, there are a few shortcomings. The chapter on Children's Hospice International highlights the progress made from the original CHI-PACC demonstration grants and includes an overview of two current state medical waiver programs to provide pediatric palliative care services. However, the majority of the information is not updated and it is not written in a manner consistent with the rest of the book, which is: How can I do the same or do this better? Much of the chapter would have been better off as an appendix because it was simply a recreation of the standards of care and practice guidelines for CHI-PACC. In another instance, a section that is subtitled "Ample and Flexible Funding" (a state that is unknown in the field of palliative care), consists of a one-sentence paragraph and then a recreation of an old listing of individuals and organizations involved in the development of the original demonstration projects 10 years ago. The list is not dated, which may lead readers to think it is current.
Assessment: The book does provide a useful and comprehensive overview of pediatric palliative care and has been updated to include the advances in the field since the last edition. As one of the few such comprehensive books focused on this population, it is an essential addition to the library of all who care for these children and their families. It would be especially useful as a review for those in the field and as a source of information for those entering the field. I would suggest a change in the title to more accurately reflect the book's focus on much more than just care at the end of life.

Ram Yogev

This book covers the concept of hospice care for children. "It is intended to serve as a useful tool for the reader who is taking care of a dying child. "The audience includes general pediatricians, family practitioners, any pediatric subspecialists dealing with dying children (i.e., oncology, pediatric AIDS, cystic fibrosis), nurses, social workers, and lay persons dealing with death (parents, teachers, clergy). "The lack of an algorithm for a model of care is a deficiency. The tables are too crowded and the type is too small. The few figures are worthless. However, the overall appearance of the book is good, and the appendixes are very helpful. "This is a timely book that covers an important topic well. The increased number of HIV-infected children living longer will make this book useful to any pediatricians and subspecialists who have not previously taken care of children in need of hospice care. The detailed index makes the use of this book easier. The book should be in all medical libraries and in the offices of pediatricians or family practitioners who are taking care of children with chronic diseases who need hospice care.

3 Stars from Doody